New member first email: hello I am a... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,827 members5,405 posts

New member first email

Selsey profile image
10 Replies

hello I am a new member and not used to emailing. I have had scleroderma for 26 years and also osteoporosis. I have felt rather alone as only know one other person with this disease.It will be so helpful to be able to share with others.Look forward to belonging.

Written by
Selsey profile image
Selsey
To view profiles and participate in discussions please or .
10 Replies
fairy56 profile image
fairy56

Hi Selsey, you have come to the right place, this is a wonderful site to get support and swap our daily highs and lows, there is always someone who can relate to a particular symptom, so please post as many times as you like. Take care x

Selsey profile image
Selsey in reply to fairy56

hi everyone lovely sunny day here in Sussex. Dr just called as have problem swallowing so more medicine but he says scleroderma is the cause so only on nutritional drinks at present. Think I am still having a problem emailing best wishes to everyone. Xxxxx

zenabb profile image
zenabb

Welcome to our group. Anything you want to talk about?

nanagill profile image
nanagill

Hello Selsey, welcome to this great site. You're never alone here. It's a good place to share info, pick up helpful tips or just have a good moan if you feel like it. Nice to meet you😊

Selsey profile image
Selsey in reply to nanagill

Thank you so much I am so blessed having you all to contact Afte 26 years and many ups and downs it's so good to share thank you xxxx

Maryam_a profile image
Maryam_a

Welcome :)

Just like everyone has said, there is so much support on here and so many stories and advice to share. I hope you are doing well, sending best wishes xx

GGhere profile image
GGhere

Pleased to meet you Selsey, grab a chair. This is a strange disease we're lumbered with and everyone experiences various symptoms to varying degrees so we're all a bit different but it really does help to share our experiences of symptoms and treatments and ways in which we cope. If you've any worries dump them here, someone will come to your aid.

KatieAnna profile image
KatieAnna

Hi I know what it's like not to know anyone else with your disease, and have found a lot of help here, so you'll be among friends now and supported from now on. X

Debbiedoughnut profile image
Debbiedoughnut

Hi Selsey, I agree with you, this is a lonely illness and if you tell people they have usually never heard of it. This is a nice friendly place and you won't need to feel lonely anymore. I have never felt better since joining. hope to hear from you soon. x

Selsey profile image
Selsey in reply to Debbiedoughnut

Hi am just making sure my messages are going on to main message board as I am new to all of this !! Xxxx

You may also like...

Email from NHS: anyone else?

people have received the same email and, like me, are wondering why since l am not on anything...

Absolutely shocking Email from Electricity north west!

I for one have been shivering every time I turn the heating off since this temp drop, I have 2 hot...

Talking to family members about our scleroderma

I'm worried about, and a family member told me, angrily, that I don't have enough evidence to be...

First day of iloprost

thank everybody for replying to my post, sorry I have not replied to you separately. Well the first...

First iloprost infusion

everyone seems to have 3 -5 consecutive days. I’m also worried about not being able to nap as I...